Struggling to be heard

  

                                                    Mary and her twin brother Alastair indulge
                                                           their love of coffee two weeks ago.
     


      Mary loved to talk. Boy, could she talk. And talk. She’d phone us a few times each day to fill us in on what was going on, to tell us funny things that had happened to her at work, to moan about things that weren’t going right … or, to just talk. She was the Queen of Communicators. You knew exactly what she was thinking. She gave outreach talks at centres for the disabled, was eloquent and none too shabby in the writing department.

      She called us once – it came through on the car phone – laughing hysterically to tell us she’d just walked down Yonge St. with a schizophrenic client who’d yelled her name over and over at the top of his lungs.

      “Oh God, how embarrassing,” one of us said.

      “He can’t help it, not his fault. His meds aren’t working,” she said.

      Compassionate: an advocate for the hurting, the wounded, the people who have a hard time in this life. She understood.

        It has been more than five years since Mary has been able to really communicate. The first sign we had that she was still there, still Mary, was on Mother’s Day, 2009. She was very pregnant, essentially still in a coma, but opening her eyes at times and trying to look around. She was in an ICU unit and monitored closely –  the plan to place her in palliative care once Isabella was born by C-section still very much an option.

      I asked her if she could smile for me – a daring thing as she was only in what they called a slightly heightened state of awareness. Could she understand me? It was worth a try. I noticed the nurse watching closely as I asked her again, “Mary, can you give me a smile?”

     Eyes barely open, she moved slightly in the bed and the corners of her mouth lifted and stayed that way. It was a start. I was ecstatic – to the point where I kept saying, “smile again for me.” She would have been rolling her eyes at me and sighing if able.

    Five years:  Imagine wanting desperately to communicate and you just can’t; the muscles in your throat become taut, your jaw seizes, your mouth just won’t move to form the words. That’s Mary. And the sound she makes, instead of speaking words, is a constant moaning sound that lifts and falls, breaks and stops. She so desperately wants to talk as quickly and fluently as she did at one time – and she can’t.

     It was always important for us to be able to understand Mary, to know what she was thinking, feeling, wanting. It became even more crucial this past autumn when a psychologist determined Mary’s intelligence is fairly intact. When he quizzed her about a hypothetical situation and asked her to define it, she croaked, “patronization.”

    When prompted, surprised, upset or angry, she can squeeze out a word or two that is completely comprehensible.

     There was an incident a few years ago, while still in hospital, that convinced us that Mary could speak if only she could get all the parts that comprise speech to work at once. We were visiting and talking about religion, something we don’t usually discuss. A staff PSW was sitting at the end of the bed, listening as Paul and I were admitting that we really couldn’t grasp the idea of belief anymore. Mary’s head came up and she said, as clear as day: “I still believe.”

     We were utterly amazed. Paul said to her: “Well, I guess if anyone’s seen the face of God, it’s you.”

     These periods of speaking clearly to us are few and far between. And why? We don’t know. We can’t get any answers. We know there was no damage to her vocal cords as a result of being intubated for an extended period of time; they did tests at our request.

   But we do know this one thing: Mary has a great desire to talk. She could talk the hind leg off a donkey (a dreadful cliché).

    She now fights like mad to work all the muscles that help us speak, including the proper exhalation of breath. But she just can’t. It’s a matter of the brain damage causing spasticity in the face and throat, the brain unable to give the right messages. But she tries. And tries. And yes, there are words buried in that moan and we can, incredibly, sometimes make out some of them.

     A few specialists have told us that she may never speak again, that the damage to her brain is so great, her memory so crappy that she will never regain the ability.

    And yet. Tell her something surprising and she’ll pop out a full short sentence and leave you gaping. How can that be? Why can she not consciously speak and yet speak when she’s distracted or surprised?

       In the early days, when she was still in hospital, we got Mary on a rehab list to have her equipped with a Dynavox. It’s a clunky machine that attaches to the frame of her wheelchair and works with Microsoft. You can send email, program sentences and phrases and do all kinds of things with it. But, due to her questionable eyesight, Mary’s Dynavox came with a fairly large keyboard, which was then covered with a piece of thick, clear plastic with holes. She was supposed to put her fingers through these holes to reach the correct letter of the alphabet.  

      It was useless, but we rented it for a year – better than its $10,000 cost. And she persisted with it. We programed in phrases, names, places and her bio. At the push of a button she could ask you how you were, she tell you what she wanted, she could give you her resume and work experiences. It was brilliant. But she just couldn’t get used to it.

     Mary has a certain amount of spasticity in her limbs that causes no end of concern and panic, at times. She was getting Botox injections in her arms to try and help this, but the last few times she’s seen the neurologist, her arms flop when he lifts them. He can move them, raise them, flex them. And he’s decided she doesn’t need it. And she probably doesn’t.

      But – and there’s always a but when it comes to Mary – ask her to use a finger to poke out a message on the Dynavox keyboard and she hits everything but the right key. Her arm shoots this way and that. It’s not so much spasticity, we’ve been told, but dystonia. Whatever it is – the lack of co-ordination and her eyesight put an end to the Dynavox.

      We then tried various excellent programs on a large iPad. Again, while it is a marvellous device for disabled individuals, it was useless for Mary; her hand would drag across the surface as she attempted to tap out a message and she’d end up frustrated and in tears.

     What has worked is a laminated alphabet page and we have several of those lying around. It’s primitive and although it works, it still doesn’t enable Mary to say more than a few words at a time.

      But we’re still trying for something better, a light box that the psychologist believes would really help her. “It’s not Mary, we just haven’t found the right technology,” he assured us. She is now officially on the waiting list for a light box, which is the type of device used by Stephen Hawking.

       The wait could take 18 months.

       This is the kind of thing that drives the parents of disabled children crazy. It’s the waiting. And waiting. There simply are not enough resources out there to help the disabled.

        Meanwhile, the iPad now holds short stories Mary can listen to as well as a number of cognitive brain games. Downloading a novel would be futile as her short-term memory loss wouldn’t let her recall what was going on in the book. It’s really too bad because she was a voracious reader.

       So we wait. And we play those cognitive games, and memory games, and we do exercises with Mary and remind her to move her mouth when she tries to talk.

       Just as dementia robs families of loved ones, brain injuries wipe out the person you knew. Gone is the extra-huge smile, the rapid-fire wit, the quirks and intelligence that comprise a whole personality. You are left with a shell, a horribly hurt brain that doesn’t allow your family member to skip and run as they used to, to laugh uproariously, to bustle about, to tell stories, to joke, to sit comfortably, to remember the times when … you are left with remnants.

      It is from those remnants that you try and mend the fabric. They’re odd-shaped pieces that don’t fit anywhere, don’t connect to other bits. So you move them about, try this way and that.  You work the bits that have some shape and you hope that by doing that you’ll tease other parts of the brain to figure out the pattern, to rewire, reconnect. And you watch closely.

       There are good days and bad. What we have discovered is that Mary – a whirlwind on two feet prior to her brain injury – needs a lot of stimulation, a lot of talk and conversation. She is bored just sitting in her wheelchair. She wants to be around a lot of people, that much is clear to us. She brightens up and listens when she has visitors, she taps out messages on her primitive laminated board. She tries to join in. She comes … alive, almost.

       So we hope. And we watch.